Come on Eileen (My Mam) Died 11.08.12

[ali40]

Hi Nicola

My thoughts are with you its amazing the strength you find when you need it, if someone had told me what was coming in the last year I wouldn't have believed it.

You will be fine enjoy any of the little bits of good times and smiles you can. Sometimes just being there and your mum knowing you're there will be enough.

Alison. xx

[DRAD3]

Hi Nicola

So sorry to hear about your Mam. As Jeni said, I do hope that she is kept pain free and as comfortable as possible. It is truely awful to know that everything is so hopeless and the fear of the unknown can be the worst part. My fear of the end was much, much worse than my experience of it. Gary, with the help of the District Nurses, was made comfortable and he slipped away peacefully in his sleep. It is the cruellest thing to have to experience but even I am grateful and know that things could have been far worse. I do hope that your Mam and you get to share some precious and peaceful moments and I send my love and will be thinking of you.

Deb

x

[NICOLA]

Mum is sleeping 90% of the time now, the doc and Mac nurse have said only days left. She's so weak, not eating only drinking, she has had to have a camode in her room as she cant walk to the bathroom, her wee is almost orange, it is killing me to see her like this. We have had a steady stream of visitors, mums sisters and best friend come daily, district nurses come twice per day.

Ive slept next to mum for the last two nights just to help her with drinks, toilet and oramorph. But tonight ive had to come home as I have my family (2 little ones and husband) to be there for too.

The doctor said her liver is enlarged and she is starting to go a yellowy colour (does anyone have any ideas about this) just like she did prior to diagnosis.

Also the doctor wanted to put her onto morphine injections but I said no she isnt in any pain yet and oramorph is doing its job. I think once she goes onto the injections that will be it she will fall asleep forever...........there is also talk of hospice but I think she is too confused to make the choice, she keeps asking what day it is and weather its morning or night.

If anyone could tell me what it was like for their loved one at the end I would be greatful.

[louiepc]

Hi Nicola

It's awful what you are going through. My heart goes out to you. I can only talk from my own experience, and I would assume that everyone is different.

My mum's last 2 weeks were strange, one day we would think that she was going, then the next day she would manage a few steps to the commode and eat a small amount. She last ate on Christmas day, she had a terrible boxing day, so much so, that we asked the nurses to give her something stronger as the oromorph was not touching her pain, she was given a shot of Medazolam (I think), and her syringe driver was increased from 5% to 20%, she did not wake up after that, she slept for 3 days.

I remember her pee being very orange and very strong. I can't recall her being jaundice though. I think this is part and parcel of the end though, probably organs starting to shut down, I'm not sure.

If you are still able to communicate with mum, talk to her, even if she doesn't respond, hearing is the last sense that goes. Even when mum was asleep in her last few days I would sit and read to her.

I am so sorry that I cannot help anymore. Lots of love,

louie xxx

[Ella50]

Hi Nicola, I have never sent any private messages on here before, but if you're able to contact me Im sure i'll be able to help x

Hope your doing ok Louie

Take care all

xxx

[NICOLA]

Mam died today.........at 1pm. No one should have to die like that rolling around shouting for help, I knew she was very near the end all of the signs were there, we constantly asked her if she was in any pain, she always said just an ache which we managed with Oramorph until last night it seemed to get worse so quickly and the oramorph wasnt working. The district nurses came out this morning and saw her pain and quickly gave her a shot and fitted a seringe driver, they said she would soon settle. I waited but it only got worse and worse, she was bringing an awful black fluid up, loads of it (can someone tell me what this is) she was shouting for me to please help her.... she died in awful pain with me and my dad grasping her hands.

I wanted to share this awful situation to help others, please get your loved one onto strong morphine before its too late. When she stopped taking all of her meds the Doctor said its time to put her on Morphine injections, the district nurse said it, my mams best friend said it, but selfish me didnt want her to go into a deep sleep because she wasnt in any pain...if only I had listened she wouldnt have died in agony. Everyone is telling me I cant blame myself I didnt know what was coming but I feel I should have done more, more quickly. Please get your loved one onto the correct pain medication QUICKLY before its too late. To my brave brave mam RIP xxxxxx

[laura]

dear nicola, my sincerest condolances to you and your dad, youve been a stalwart to the family, your mam is at peace, now look after you, the coming days will bring more heartache, but no suffering for your mam,

thinking of you my dear, love laura xxxxxx

[farmers wife]

Dear Nicola, my heartfelt condolences to you, your Dad and your family. Your Mam was a brave and lovely lady.

No more pain for your Mam, may she rest in peace and love.

I continue to think of you, praying for your strength and courage to get you through the coming days.

Take good care of yourself and your Dad. Sent with much love, Karen xx

[Ella50]

Nicola, im so sorry to read about your mam

Take care of yourself,

love Ella xx

[francis]

Oh Nicola please don't torture yourself with "if onlys" If its any consolation to you I would have done exactly the same as for as long as I can remember my mother has made it know that she would not want to be out of it on morphine for the last couple of days of her life, and I'm sure her opinion hasn't changed. You did what was right at the time and no one could predict that they would not be able to get her pain under control. If they defiantly knew they would have been blunt with the truth and insisted. What all the specialist do know is that everyone is different and they just hope they get it right for that person. What your mam did know was that you and your dad were there every step of the way holding her hand.

It was such a shock to read that your mam was gone. I feel very frightened for myself and my mam. Please know that I am thinking of you xxx

[NICOLA]

Thanks, Francis, Apparently Im being told maybe mum wasnt in that much pain, part of it could have been terminal restlessness or delirium. I dont know......hope your mums ok x

[PCUK Nurse Jeni]

Dear Nicola,

I am so very sorry to read about the death of your mum. Please accept my sympathies, as well as those of the charity, at this sad time.

Kind regards,

Jeni.

[DRAD3]

So very sorry to hear your news, Nicola. As already said, don't torture yourself with if only's. You did the very best you could in an exceptionally difficult situation - how were you to know what would happen? Whatever you had decided, you would have wondered if it was right. My husband Gary was given a very high dosage of morphine on his last day and the nurses said that it would likely wear off during the night and would be topped up - he died before they returned and I did not have the chance to tell him I loved him one last time or tell him things he may have needed or wanted to hear. Had someone told me that he could still hear me and would be gone so soon, I would have sat with him and talked and talked and held him. I have to hope that everything I did before was enough. Your Mum is at peace now and be sure, she will be so very proud of you and she will have felt very loved and cared for. Try not to think too much of those last moments (I know that is difficult because they barge their way in a lot don't they?) and focus on all the wonderful positive times you shared and how brave your mum was as you have been. Take the strength you know you have and hopefully it will help you through the times ahead. Thinking of you and your family, Nicola. Remember we are here for you.

Love

Deb

x

[NICOLA]

Thank you everyone, thank you Deb such helpful wordsxxx

Nicola

[rachelqt]

Oh Nicola im so sorry to read about your Mam. My heart feels for you and I hope you get strength to get through all this. Your in my thoughts and prayers..Rcahel xx

[francis]

Hey Nicola how are you doing. I hope you have found comfort in what others have told you. I suppose it's a natural thing for us to question ourselves and ask "could we have done more?" It may be that as carer's and nurturers ourselves this is something that we just can't fix or make better.

We managed to go out for food yesterday all the family, she wasn't hungry as only taking one steroid every other day weaning off them and then the mac millian nurse is going to put her on another low dose anti psychotic drug to help with appetite ect. But she did manage to eat a small carvery. It is so sad to see her she is very thin now and has difficulty in walking as she has pain in the back of her leg due to muscle wastage due to the steroids, can't win can you?! She came out but I think she would rather have stayed home as she say's she is comfortable there. I really don't know what to do for the best, shall I stop keeping on for her to go out? Ive been noticing if i go into the toilet after her and she forgets to pull the flush that her wee has a strong smell and is orange. I haven't told anyone that, ive read that is a sign that the body is shutting down. We have chemo today and a scan on thursday. Last week they told us that her markers had gone down from 80947 to 40741 not sure what that means, it sounds good but she doesn't look better. She is very depressed and doesn't smile much anymore can't blame her really. Look after yourself Nicola, Ella, Helen and Racheal and everyone else living with this awful cruel disease xxx

[Janp]

Hi Nicola

Your story was one of the first I read when I found this wonderful site. I could feel you willing your Mam on every step of the way. You are an amazing person and you have nothing to regret about your time with your Mam. You did everything you could for yourself and for your Mam also. You were her voice. You knew her best and how could you have known her last hours would be so traumatic?

I hope I have your strength when the time comes for me. Sadly through your pain I can learn from your experiences and if I can help my Mum and ease things for her I can now.

Thank you for having the strength to share with us.

I am thinking of you and sending you my love and thanks.

Jan xxx

[NICOLA]

Hi Francis, Im doing ok, I dont know how I am doing so well when I have lost my best friend and mam, she meant the world to me, she was such a strong person herself she had a tough upbringing I think I have inherited her strength, I am greatful that there are so many jobs to do and arrangements to make keeping me busy. My dad asked me to check through her handbag yesterday a he knew she had money in there, I found some photos of me when I was little and some of my kids, it broke my heart. Francis you know and I knew we dont have long enough with our mums and I hope you are making the most of every minute as we did, near the end mum became to weak to get out of bed, her sisters came round and her friends and we still laughed and cried and talked about the good times, we got loads of old photos out. We never talked about her dying we could never talked about after we just enjoyed each day. Im so greatful for this. Be strong for your mum and just go with what she wants and make sure she has lots of support from the nurses xxx

Love Nicola xx

Thanks for your kind words Jan they really mean alot xx

[louiepc]

I am so very sorry for your terrible loss. Please try not to blame yourself or go along the "what if" road, easier said that done, I know. No one can predict what "the end" will be like, everyone is different, and you and your Dad did everything you could to look after your Mam.

My Mum had a very similar episode, 3 days before she died, I sat with her all night, breathing with her to get her through the pain, 5 hours I sat with her, having injections and none of them touching the pain. Eventually she had a very strong dose and it made her sleep. She didn't wake again.

You are going to have some extreme emotions and thoughts, try not to think too much, it will be a complete rollercoaster for a fair amount of time. If you ever want to talk, I am here, as are lots of others on this amazing site.

Love louie xxx

[ucyocho]

Hi nicola,

Have just read through your story, so very sad. My mother passed away a week and a half ago in the same way as yours and I am torturing myself that they didn't get her pain relief right. They thought she had a few more weeks but she just suddenly went one minute she was playing with the children the next she suddenly panicked that she was dying.

I spoke to the hopsice nurse as was very worried but she told me it defintiely wasn't imminent but unfortuantely it was. We persuaded my father to stay overnight as I didn't want my mother waking up alone so we got a call about 5am to say to come in and she died at 8.15 to the total suprise of the hospice nurse and drs. Very hard to watch.

I just wondered how you were doing and how you were managing to cope.

Kind regards

Clara.

[DRAD3]

Hi Clara

So sorry to hear about your loss. You will see that I posted previously on this thread but just wanted to reiterate that I share your distress. When my husband passed away, it happened very quickly. We obviously knew it was going to happen and I had an instinct that it was coming, as I knew him and felt him fading, but was still surprised that no-one else seemed sure that the end was imminent. I am not sure why this is - whether it is specific to pancreatic cancer - it does seem to catch everyone unawares all the way down the line. Thinking about it now, I know my husband would have preferred it that way in any case. It is certainly not like in the movies and leaves us with pictures in our head that we spend a lot of time trying to push aside. As time goes on, you will find this easier and pictures of your mum in happier times will come to mind instead. You will be feeling incredibly sad and will have days when you feel so low but hopefully there will also be days when you feel OK and can carry on. I do hope that you have family and friends who can help you through the coming weeks and so glad that you posted and hope that you feel able to talk to us again if you need to. There will always be someone who will listen and understand.

lots of love

Deb

x